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Multiple Sclerosis Health Center

What to Expect With Primary Progressive MS

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At heart and at home, an essential makeover

For Mimi, living with progressive MS means both a stubborn resistance and a grudging acceptance of her ever-changing reality. Recently, Mimi reached a new turning point in her life with MS. For the first time, she found herself on the floor, unable to get up to her chair.

Panic set in. “I said, ‘Oh my God, I’m a disabled person!’” she recalls. “There was this rush of vulnerability -- before that, it was always an anger thing.”

A dark depression followed, lasting weeks before lifting. In its wake, she and her husband, John, are working on solutions to their newest dilemma -- no more riding the now-dangerous chair lift to the second floor.

A new fully accessible ground-floor addition to their home in Virginia will be an expensive but necessary project. Thanks to John’s efforts, donated materials from local builders are coming in. And stay tuned: a “home makeover” television program has even picked up the story.

“He went into ‘rescue mode,” Mimi says, referring to John sending out hundreds of letters seeking help from friends, family, and businesses. “And for once I let him,” says Mimi.

As in Mimi’s case, the paradox of having to accept progression while struggling against it is at the center of life for thousands of people living with primary progressive MS. Or as Mimi puts it, you have “to stay in the day and find peace and gratitude with what you’ve got -- because you never know when you’re going to lose that.”

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Reviewed on July 31, 2008

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